P.E.I. woman spending life savings waiting for lung transplant in Toronto

Lorraine MacKenzie from P.E.I. is currently living in one of the most expensive cities in Canada, desperately waiting for a lung transplant.

P.E.I. government gives $1,000 a month for patients' living costs

Lorraine MacKenzie was diagnosed with idiopathic pulmonary fibrosis in 2016. It's a fatal disease that causes scarring in the lungs. MacKenzie's only option is to relocate to Toronto, one of the country's most expensive cities to live in, for a lung replacement surgery. (Ivan Arsovski/CBC)

Lorraine MacKenzie would rather be at her home in Beach Point, P.E.I., but is currently living in one of the most expensive cities in Canada, desperately waiting for a lung transplant.

MacKenzie has genetic idiopathic pulmonary fibrosis, also known as lung scarring, which runs in her family. Several of her relatives have already died from the disease.

The only solution is to get a lung transplant. The problem for MacKenzie and other Atlantic Canadians is that the surgery isn't done anywhere in the region.

Instead, patients have to relocate to Toronto to get the surgery and since donated lungs can only live outside the body for several hours, transplant candidates have to be near the hospital.

But the cost of moving to Toronto until a match is found — an average wait of six months — and then remaining another three months during the long post-transplant recovery, is only partly covered by the Atlantic provinces.

"There are a lot of people out here who cannot afford to be here. They really, really can't. There are some who have chosen to die because they can't be here," MacKenzie said. 

"It's heartbreaking to watch these."

While MacKenzie believes her savings will be enough to support her and her husband in Toronto while she waits for new lungs, she's lobbied the P.E.I. government to increase its funding for patients needing to pay for accommodations.

$4,000 a month in rent

In order to make the move, MacKenzie's husband took an early retirement and the couple has been using their savings to live in Toronto while she waits for surgery.

They've been in the city since April and are currently staying at a friend's place for the summer. She said prior to that, they had been paying $4,000 a month for a two-bedroom condo and will be moving into another condo that costs the same amount in September.

"It's an expensive move. There's no two ways about it," she said.

MacKenzie says she and her husband are using up their savings to keep up with the cost of living in Toronto, but said many others she's spoken to are unable to and some have chosen to die instead. ( Ivan Arsovski/CBC)

Most of their expenses have had to be paid out of pocket because the government of P.E.I. only pays $1,000 for living expenses, the lowest in Atlantic Canada.

"We're just slugging here one day at a time, one foot in front of the other and doing what we have to do," MacKenzie said.

MacKenzie had reached out to the previous Liberal government before it called an election in April. She's hoping that the new Progressive Conservative government will make a change.

"They have to for people out there who don't have any savings ... You can be young and need a transplant. There's people out there who cannot afford to come. So they just have to step this up," MacKenzie said.

Province to increase funding 

P.E.I. Minister of Health and Wellness James Aylward said the issue is "a top priority" and that his department is actively working to try and increase funding for living costs. 

P.E.I. Health Minister James Aylward says he recently found out about the issue, but his department is doing research to try and increase funding for living costs for lung patients as soon as possible. (Nicole Williams/CBC)

"This just recently came to my attention and I've already asked the staff to do a full jurisdictional scan," he said. "I, as minister, want to know what all of the provinces across Canada and the territories are providing for their citizens as well."

Aylward did not specify how much he would increase funding by, but said he plans to make an announcement in September, which the province will be designating idiopathic pulmonary fibrosis month.

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